When my brother Ryan was 18 he was diagnosed with Acute Lymphocytic Leukemia. He fought cancer while finishing his senior year of high school and went on to study French, music, and international studies at the University of Missouri. In 2010, just as he turned 24, Ryan was rediagnosed with ALL. He underwent treatment at Barnes Jewish Hospital in St. Louis, received a stem cell transplant, and beat cancer for the second time.
Since Ryan's transplant, he has developed graft versus host disease, which occurs when the immune cells of the transplanted tissue think the recipient's body cells are foreign and attack them. For Ryan, the symptoms showed up in his skin, liver, and lungs. For the past two years he has made the three hour drive to St. Louis every other week to receive two days of a treatment to slow the progression of the GvHD. Despite this treatment, Ryan has continued to struggle with breathing. The disease has caused scarring on his lungs which permanently decreases his lung capacity. The lung damage has put a lot of limitations on Ryan's life, but he has adjusted gracefully and continues to pursue his love of music and composition.
On February 25th, Ryan felt unusual symptoms in his heart and went to the emergency room in Macomb, Illinois where he and his partner, Matt, are both in grad school. He was put on oxygen and waited in the ER for two days for a room to become available at Barnes. On the 27th, he was taken by ambulance to St. Louis and admitted to Siteman Cancer Center. After a few days of testing, the doctors found that he had two strains of influenza. The flu, combined with the lung damage from GvHD, made it extremely hard for him to breathe. The effort it took to breathe put a lot of strain on his heart, which was then unable to circulate enough oxygen to his body. As a result, his oxygen levels were low and his heart rate was extremely fast. Those two problems worked in a vicious cycle, each making the other worse.
Over the next two and a half weeks, Ryan's condition gradually declined. He was transferred in and out of intensive care twice before being admitted to the ICU for the third and final time on March 15th. A week later on March 22nd, the team at Siteman decided Ryan's heart was the main concern at that point and he was transferred to the cardiac ICU on a different part of the hospital campus. The move was difficult and Ryan continued to struggle more and more with breathing. Each breath took an incredible amount of energy and he was exhausted. Two days after the move he couldn't keep his oxygen levels high enough on his own anymore and he had to be put on a ventilator. Ryan was sedated, intubated, and given a feeding tube through his nose. While the prospect of intubation was scary, the procedure went smoothly and the ventilator, by breathing for him, allowed Ryan's body to rest for the first time in weeks. His heart rate, which had previously hovered around 160 beats per minute, slowed to a near normal rate in the 80s. His oxygen levels and blood pressure were good and things were proceeding well. The next step was to put in a tracheostomy. He would remain on the vent, but instead of going in through his mouth, the tube would go in though his throat so he could be taken off sedation and start the slow process of coming off the ventilator.
Since the trach and a new surgically implanted feeding tube were put in on March 30th, there have been a few setbacks and progress has been difficult. On the night of April 6th, the surgeons put in a new trach in a smaller size, which fits Ryan better and seems to be making a positive difference. He has started physical and occupational therapies to get his strength back and will hopefully start to be weaned off the ventilator soon. We're determined not to have anymore setbacks and expect that Ryan will continue to get strong and healthy again, but the road to recovery will be long and difficult. When Ryan is strong enough, he will go to a pulmonary rehabilitation facility where he will work with a wide array of specialists who will help him get back to a point where he can function day-to-day.
Ryan and Matt are both graduate students and have assistantship positions which help them pay for tuition and living expenses. Ryan also works as the handbell choir director at a church in Macomb. The past six weeks of hospitalization have prevented Ryan from finishing the current semester and it will be many months before he is able to go back to work. Even then, the jobs that Ryan is able to do may be more limited than they already were. The loss of half their income combined with the expenses of hospitalization, rehabilitation, and ongoing care will be extremely taxing on Ryan and Matt financially. During this time, many friends, family members, acquaintances, and even strangers, have asked what they can do to help. Ryan, Matt, my parents, and I have everything we need during this time in the hospital, but we want to make sure Ryan and Matt can pay their bills and have financial stability when Ryan finally returns home. We would all be overwhelmingly grateful for any contribution you are able to make to help Ryan and Matt focus on Ryan's health rather than managing to pay the bills.
As Ryan approaches his 30th birthday this summer, it is safe to say he has fought longer and harder than most people twice his age. He is the strongest person many of us have ever known. He has always been the big brother I look up to, who inspires me, teaches me, and pushes me forward. I knew he was strong. I knew his will to live a full and creative life was solid. But watching him struggle through this nightmarish ordeal has me searching for a superlative that doesn't exist. I can no longer put into words my amazement at my brother's fortitude. In the words of his oncologist, "he is an inspiration to us mere mortals". Thank you all for your thoughts and prayers of strength and healing and your tremendous kindness during this incredibly difficult time. It means the world to all of us.
With love and eternal thanks,
Alie McNeil
Since Ryan's transplant, he has developed graft versus host disease, which occurs when the immune cells of the transplanted tissue think the recipient's body cells are foreign and attack them. For Ryan, the symptoms showed up in his skin, liver, and lungs. For the past two years he has made the three hour drive to St. Louis every other week to receive two days of a treatment to slow the progression of the GvHD. Despite this treatment, Ryan has continued to struggle with breathing. The disease has caused scarring on his lungs which permanently decreases his lung capacity. The lung damage has put a lot of limitations on Ryan's life, but he has adjusted gracefully and continues to pursue his love of music and composition.
On February 25th, Ryan felt unusual symptoms in his heart and went to the emergency room in Macomb, Illinois where he and his partner, Matt, are both in grad school. He was put on oxygen and waited in the ER for two days for a room to become available at Barnes. On the 27th, he was taken by ambulance to St. Louis and admitted to Siteman Cancer Center. After a few days of testing, the doctors found that he had two strains of influenza. The flu, combined with the lung damage from GvHD, made it extremely hard for him to breathe. The effort it took to breathe put a lot of strain on his heart, which was then unable to circulate enough oxygen to his body. As a result, his oxygen levels were low and his heart rate was extremely fast. Those two problems worked in a vicious cycle, each making the other worse.
Over the next two and a half weeks, Ryan's condition gradually declined. He was transferred in and out of intensive care twice before being admitted to the ICU for the third and final time on March 15th. A week later on March 22nd, the team at Siteman decided Ryan's heart was the main concern at that point and he was transferred to the cardiac ICU on a different part of the hospital campus. The move was difficult and Ryan continued to struggle more and more with breathing. Each breath took an incredible amount of energy and he was exhausted. Two days after the move he couldn't keep his oxygen levels high enough on his own anymore and he had to be put on a ventilator. Ryan was sedated, intubated, and given a feeding tube through his nose. While the prospect of intubation was scary, the procedure went smoothly and the ventilator, by breathing for him, allowed Ryan's body to rest for the first time in weeks. His heart rate, which had previously hovered around 160 beats per minute, slowed to a near normal rate in the 80s. His oxygen levels and blood pressure were good and things were proceeding well. The next step was to put in a tracheostomy. He would remain on the vent, but instead of going in through his mouth, the tube would go in though his throat so he could be taken off sedation and start the slow process of coming off the ventilator.
Since the trach and a new surgically implanted feeding tube were put in on March 30th, there have been a few setbacks and progress has been difficult. On the night of April 6th, the surgeons put in a new trach in a smaller size, which fits Ryan better and seems to be making a positive difference. He has started physical and occupational therapies to get his strength back and will hopefully start to be weaned off the ventilator soon. We're determined not to have anymore setbacks and expect that Ryan will continue to get strong and healthy again, but the road to recovery will be long and difficult. When Ryan is strong enough, he will go to a pulmonary rehabilitation facility where he will work with a wide array of specialists who will help him get back to a point where he can function day-to-day.
Ryan and Matt are both graduate students and have assistantship positions which help them pay for tuition and living expenses. Ryan also works as the handbell choir director at a church in Macomb. The past six weeks of hospitalization have prevented Ryan from finishing the current semester and it will be many months before he is able to go back to work. Even then, the jobs that Ryan is able to do may be more limited than they already were. The loss of half their income combined with the expenses of hospitalization, rehabilitation, and ongoing care will be extremely taxing on Ryan and Matt financially. During this time, many friends, family members, acquaintances, and even strangers, have asked what they can do to help. Ryan, Matt, my parents, and I have everything we need during this time in the hospital, but we want to make sure Ryan and Matt can pay their bills and have financial stability when Ryan finally returns home. We would all be overwhelmingly grateful for any contribution you are able to make to help Ryan and Matt focus on Ryan's health rather than managing to pay the bills.
As Ryan approaches his 30th birthday this summer, it is safe to say he has fought longer and harder than most people twice his age. He is the strongest person many of us have ever known. He has always been the big brother I look up to, who inspires me, teaches me, and pushes me forward. I knew he was strong. I knew his will to live a full and creative life was solid. But watching him struggle through this nightmarish ordeal has me searching for a superlative that doesn't exist. I can no longer put into words my amazement at my brother's fortitude. In the words of his oncologist, "he is an inspiration to us mere mortals". Thank you all for your thoughts and prayers of strength and healing and your tremendous kindness during this incredibly difficult time. It means the world to all of us.
With love and eternal thanks,
Alie McNeil
Organizer and beneficiary
Matt Saltzberg
Beneficiary